European Patient Organizations in Knowledge Society

February 1, 2009 to April 30, 2012
39 months

EPOKS is a collaborative project continuing the ITEMS network and the MEDUSE project,  coordinated by CSI (Ecole Nationale Supérieure des Mines, Paris) associating research teams from the Centre for Social Studies of the University of Coimbra (Portugal), the University of Cork (Ireland), the University of Lancaster and the University of Durham (UK). The EPOKS project seeks to investigate the contribution of patient organizations to the production of knowledge and to the governance of knowledge production through a comparative approach of four health conditions (rare and/or orphan diseases; childbirth; Alzheimer’s disease; and Attention Deficit and Hyperactivity Disorder) with emphasis on the emergence and the role of European coalitions and platforms in this field.  The work of the Portuguese research team will focus on the first two conditions and will include comparative analysis.


enlargement of databases created by CSI and CES in MEDUSE project; a national and a comparative report for each health condition and workpackage; collaborative research method and fieldwork; presentation of results to patient organizations; a booklet for PO’s; an international workshop with all concerned actors and a final report.

Ângela Marques Filipe
Daniel Neves
João Arriscado Nunes (coord)
Marisa Matias
Marta Roriz
Susana Costa
governance, knowledge, health, patient organizations
Funding Entity
European Commission